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Postoperative recovery has been defined as a process where the patients return to their preoperative level of physical and psychological well-being and to their everyday life as it was before the surgery. Postoperative recovery is also described as a process during which patients struggle to return to a feeling of being whole and independent of healthcare professionals (Allvin et al. 2007, Allvin 2009).
According to Allvin et al. (2007), postoperative recovery can be divided into four dimensions: physical, psychological, social and habitual. The main goals are to regain control over bodily functions, to return to mental well-being, to move away from being sick and to feel healthy (Allvin et al. 2007). Allvin (2009) and Wolfer (1973) both describe how important it is for healthcare professionals to be aware of their role in the patient's postoperative recovery. Individualised information and support are key elements in each patient's recovery process (Wolfer 1973, Allvin 2009).
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Cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC) as a treatment for peritoneal carcinomatosis (PC) is an aggressive form of treatment that affects patients' physical and mental health, and their ability to recover after the surgery (Cioppa et al. 2008, Sugarbaker 2008, Macrí et al. 2010).
Peritoneal carcinomatosis is a form of metastasis of tumour cells to the peritoneum (Houghton Mifflin Company 2004, Standrin 2008, National Cancer Institute at the National Institute of Health 2012). It may originate from primary peritoneal malignancies (Glockzin et al. 2009), but the majority stem from a spread of tumour cells, progression of illness or recurrence of tumours of gastrointestinal or gynaecological origin (Tristan et al. 2007, Glockzin et al. 2009). Between 5–50% of all cases of primary gastrointestinal or gynaecological cancers with metastasis can result in PC (Chu et al. 1989, Jayne et al. 2002, Ozols 2004), and PC occurs in patients of all ages (mean age: 50 years) (Hansson 2009).
Peritoneal carcinomatosis is generally associated with a poor prognosis for survival and recovery (Glockzin et al. 2009, Kusamura et al. 2010, Spiliotis et al. 2011). Treatment with CRS and HIPEC has increased the chances not only for survival but also for full recovery with improved quality of life (Mahteme et al. 2004, Sugarbaker 2008, Glockzin et al. 2009, Kusamura et al. 2010, Macrí et al. 2010).
Apart from the surgery, which is described as major and aggressive and not suitable for all patients, the postoperative recovery process is long and challenging both physically and mentally (Cioppa et al. 2008, Sugarbaker 2008, Macrí et al. 2010, Arakelian 2011). Studies have illustrated that patients who undergo treatment with CRS and HIPEC describe an impact on their mental health immediately after the surgery (McQuellon et al. 2001, Schmidt et al. 2005, Arakelian 2011, Arakelian et al. 2011). During the first three weeks, symptoms of disturbed sleep (67% of patients), anxiety, depression, nervousness, feelings of abandonment and/or hallucinations (64% of patients) were described in patients' medical records (Arakelian 2011).
The studies by Schmidt et al. (2005) and McQuellon et al. (2007) also show the same tendencies. The experience of these psychological symptoms is strongest during the first initial weeks after the surgery. During the follow-ups at three, six and 12 months after surgery, patients describe an improvement in their mental health (McQuellon et al. 2001, 2007, Hill et al. 2011).
Health professionals have an important supportive role to play in patient recovery. It is therefore important to gain a better understanding of how health professionals can support patients after CRS and HIPEC. The aim of this study was to study patients' own descriptions of their health after CRS and HIPEC and before discharge from the hospital.
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Three themes and nine categories emerged. The themes were: a process, body and mind, and support. The surgery was described as a turning point, followed by a period of hope and thankfulness. Nevertheless, the patients had difficulty taking in their positive feelings because they were overwhelmed by their bodily ailments. Despite the patients' descriptions of being on an emotional roller coaster, having thoughts about death and an uncertain future, or being in a state somewhere between sleep and wakefulness, they described themselves as being in good psychological health. Continuous individualised information, plus support from the surgeon and staff members, was described as being important for the recovery process, and none of the patients asked for counselling before discharge.
The findings are presented in themes and categories in Table 3.
Table 3. Overview of themes and categories of patients' experiences of postoperative health
|A process||To start from the beginning|
|A sense of hope|
|Uncertain future and death|
|Body and mind||To keep up with one's own body|
|Emotional roller coaster|
|A state of somewhere between sleep and wakefulness|
|Support||Support from the surgeon and staff members|
|Continuous individualised information|
|Counselling or chat|
Theme: a process
Recovering from the severe surgical procedure was described as a process of starting over from the beginning, sometimes with ups and downs, of feeling a sense of hope, and reflections about future and death. The process was discussed as being energy-demanding. Three categories emerged: to start from the beginning, a sense of hope and uncertain future and death.
To start from the beginning
After surgery, which was described as a breakpoint, patients started from the beginning to regain control and acceptance of changes in their body's functions. This period was characterised by becoming used to the situation, being able to take care of oneself and becoming independent. At the time of discharge, a few patients talked about their longing to leave the hospital yet not feeling physically or mentally prepared:
When I woke up this morning I felt like life began anew again… now I feel good… It's all about… you can walk, move… (Interview 10)
It's as the surgeon says… He said two to three months before I get back to myself. And I think, I may have to start from scratch with everything. (Interview 5)
A sense of hope
Even though the recovery process was tough and rough, the patients could feel a sense of hope and thankfulness, a sense that they were in good health. The surgery was over and the process towards regaining their health could finally begin. It was difficult to get past the challenges of the first postoperative days, but they were determined to gradually get better and better. Many patients were surprised that they felt better than they expected to feel and looked forward to going home:
I was so ill, but then it has indeed gotten better and better and I also feel some kind of hope that it will be fine, because I feel that my stomach works better and better actually…and they [the staff members] did tell me that it will work normally again. (Interview 4)
Everything is improving all the time. It happens slowly… You don't think you can get up. One day you can't get up, but the next day you get up and on the third day you can walk…. (Interview 2)
Uncertain future and death
Several patients expressed concerns about an uncertain future. The surgical procedure and the disease itself had brought the patients close to death, and some realised that life is finite and that no one is immortal. Questions arose about the future, the financial situation, the ability to have children and not wanting to die:
Death… Not to wake up [after surgery], family and house and things. It's the worst…life goes on…it doesn't stop just because I die… (Interview 1)
Suddenly I realize that life is finite and that I'm going to die… and maybe pretty soon…Then everything [in one's life] gets very different… (Interview 15)
Theme: body and mind
During the early recovery phase, the patients were busy keeping up with their body's reactions, trying to handle the emotions that arose after surgery or being in between two worlds. Three categories emerged: to keep up with one's own body, emotional roller coaster and state of somewhere between sleep and wakefulness.
To keep up with one's own body
During the first days after surgery, the patients experienced poor memory and poor general health. The surgical procedure was described as extensive and tough, and as a result, there followed physical and psychological fatigue and weakness beyond the ordinary.
In the early recovery phase, the patients were busy with the physical functions of their bodies and recovering from the surgery rather than with their mental health. Common problems were pain and the resulting difficulty in regaining mobility, postoperative pain management, nausea and loss of appetite. Patients described every step back, such as having infections or fever, as significant:
…I mean you are busy with drinking liquid and eating food, and you don't know what happened really. You don't take it in, you should be happy… (Interview 15)
…after surgery you suffer the consequences, feeling very tired, weak and you can't be bothered so much. It's hard to find energy to stand up and such things. It's not really tough, but it is an effort even to go down to the dayroom for example… (Interview 11)
Emotional roller coaster
The patients described having difficulties handling the emotions that they felt after surgery. Some patients experienced it as an emotional short circuit such as panic, which in one case was caused by opiates. Others described it as being on an emotional roller coaster. Although many were grateful for having had a successful surgery, they were overwhelmed, bursting into tears one minute and laughing the next:
I think your whole head is awash with so many questions and thoughts and impressions and expressions, so you can't sort them out. That's why you have panic attacks. Because you don't know what to think about, you can't focus [your thoughts]… (Interview 2)
It is more like mood swings. Crying one minute, laughing the next, sleeping the next… that's what it's like and that's what has been tough: why do I cry so much? I have nothing to cry about really. Everything has gone well and the staff around here is so amazingly nice but for now, these crying attacks keep coming back… (Interview 14)
State of somewhere between sleep and wakefulness
Sleeping in intervals was commonly described, and some of these disturbances were caused by the ward environment. Most patients commented on the environment of the postoperative care ward in the early postoperative phase, which was described as noisy with no privacy for the patients and feeling like a storage room for patients. Positioning in the bed, chills, worry and having many or strange dreams were other reasons for sleep disturbances. However, while several patients talked about having unchanged sleeping patterns postoperatively, some talked about hallucinations or being in a state somewhere between sleep and wakefulness:
…This painting, for example, I could turn into all sorts of shapes and even though you can't think of anything, yet you think of a lot. And you don't really know you're in kind of an intermediate world, hallucinating or something like that. Very tough mentally… (Interview 2)
and then I got to another place… the postoperative care ward or something. It was a terrible place to be in. Far too many patients and not enough staff. It was almost as if you could feel an atmosphere of “Don't come here and disturb us. You're in the way”… and that didn't feel good… (Interview 14)
Many factors were mentioned as having an impact on the recovery process, such as continuous individualised information, support from the staff members, especially the surgeon, and talking to someone in the form of counselling or small talk. Three categories emerged: support from the surgeon and staff members, continuous individualised information and counselling or small talk.
Support from the surgeon and staff members
Almost all the patients felt that the surgeon had an important role in their recovery process. The patients were amazed by the personal engagement, positive energy and motivational talks by the surgeon who visited the patients many times during the day and always had time for conversation. Patients felt that they were a part of their own care and that they were acknowledged and well treated by the staff members who were described as supportive, encouraging, competent, present and listening, all of which resulted in gaining the patients' trust:
…he [the surgeon] visited me twice a day….he is phenomenal, he has helped me… he is enormously positive….he has supported me a lot… (Interview 11)
… The nurses and the assistant nurses are more involved in this [group of patients]. They come into your room and ask (how you are), although they may not even be working that particular shift… they might ask when they walk past in the corridor as well. It feels really nice that there is someone who cares beyond what they need to; they take it one step further. It feels incredibly rewarding, you feel noticed and I'm very grateful for that. (Interview 16)
Continuous individualised information
Straightforward and honest information that was adapted to the patient's individual needs was important for the recovery process. The information provided before surgery prepared the patients not to be surprised by the events that occurred postoperatively. The amount of information should vary depending on the patient: some want to know more and others less, for example, about the surgical procedure. However, many patients agreed that continuous information was important on a daily basis. They wanted to know that they were not the only one who had certain symptoms but that the staff had seen those symptoms before:
…thorough information…. direct and to the point, not just half-truths and confusing answers but it was honest and sincere… (Interview 12)
…Some patients don't want to know if the surgery might be very hard, so sometimes it's better not to know… (Interview 16)
Counselling or small talk
Several patients believed that having a conversation with someone was a form of support. Some patients preferred a small talk with staff members, the surgeon or their family members. For these patients, it was important to have a social context. Others talked about more professional help in the form of counselling or a patient association or talking to someone who has actually gone through the same surgical procedure. However, counselling was perceived as important by many even though they also stated that they were occupied by their physical symptoms and were not reflecting on their mental health for the time being.
One patient expressed the latter as:
…but I didn't get the opportunity [counselling], but even if I had had it, I wouldn't have taken it. …Patients should be given the opportunity to have counselling. They [the staff members] should ask the question and the choice should be completely voluntary for the patient… (Interview 16)
…that someone had the time to sit and talk…the hours can be long, especially on those days you don't have visitors. Could be fun with someone who had time to talk. There is time and opportunity if you need to talk and asked the staff… (Interview 12)
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According to studies by Cioppa et al. (2008), Macrí et al. (2010) and Sugarbaker (2008), CRS and HIPEC is an aggressive form of treatment that affects the whole patient physically and mentally and thus affects the ability to recover after the surgery. The surgical procedure is considered arduous, and the waiting time before having the surgery is between four–six months.
However, in this study and during this early phase of recovery (before discharge from hospital), many patients described being in good mental health or feeling better than expected. The first theme of this study mostly describes the feelings and thoughts that arise after surgery. Patients in this study expressed a feeling of hope and thankfulness that the surgery, which was described as a turning point, was done. It may be speculated that before surgery and during the waiting time for surgical procedures, patients built up some level of anxiety (Sukegawa et al. 2008), not knowing how far the cancer had spread or how long they would have to wait for surgery (Perks et al. 2009). This, in its turn, may explain why surgery is called a turning point, something that the patients have been waiting or longing for. After surgery, a positive feeling of hope and a new beginning arises, and this is followed by thoughts of uncertainty about their future and death. The patients' experiences during the period from receiving the diagnosis up until surgery were not studied. However, these might well have an effect on patients' mental health and the emotions that arise after surgery.
During the early postoperative period, many patients focused on the reaction of their bodily functions to surgery. The main problems during this period were pain, nausea and loss of appetite and fatigue. Allvin et al. (2007) and Allvin (2009) described postoperative recovery as a process that focuses on returning to a feeling of being whole (Allvin et al. 2007, Allvin 2009). This was described in the second theme and underlying categories that emerged in this study, which highlighted the importance of gaining control over bodily functions and trying to deal with the emotions that came up after surgery. Arakelian (2011), Arakelian et al. (2011), McQuellon et al. (2001) and Schmidt et al. (2005) reported symptoms of disturbed sleep (67% of patients), anxiety, depression, nervousness, a feeling of abandonment and/or having hallucinations (64% of patients) during the first three postoperative weeks.
Having experiences like hallucinations and being in a state somewhere between sleep and wakefulness was one of the categories found in this study. Patients also described having emotional ups and downs and having crying attacks, which they could not explain even though the surgery had been successful and pain and other physical symptoms were milder and fewer than expected. Studies by Hill et al. (2011), McQuellon et al. (2001, 2007) indicate that these reactions are strongest during the first few weeks after the surgery and that within the follow-ups three, six and 12 months after surgery, patients describe an improvement in their mental health.
It may be argued that sleeping disturbances or hallucinations may be caused by medications or the anaesthetic agents received during surgery. However, this issue was not addressed in this study. Patients mentioned sleeping in intervals especially during the first few nights after surgery. Some of the explanations for this were the nightly postoperative controls of blood pressure and so on performed by the nurses. Another issue was the impact of the environment, especially in the postoperative care ward, which was mentioned by many. Noise, light and feelings of stress were described as being the reasons for not sleeping well. The impact of sound in the environment on patients' heart rate and blood pressure has been highlighted in a study by Hsu et al. (2010) as causing annoyance and insomnia. However, in this study, sleeping patterns were normalised for many patients in the surgical ward.
The third theme in this study concerned support. Interestingly, in the current study, none of the patients had asked for counselling postoperatively during their hospital stay. Two patients had had such help preoperatively, and one was diagnosed with burnout. However, counselling was perceived as important by many, even though they also stated that they were occupied by their physical symptoms and were not reflecting on their mental health for the time being. Many preferred small talk in the form of everyday talk (Swenne et al. 2007) or someone to talk to whenever their questions arose, which could be at night or after visiting hours. Patients mentioned the surgeon, his frequent visits, enthusiasm and positive energy and being involved in their own care as important for their recovery process. The role of healthcare professionals in the patient's postoperative recovery was mentioned by Allvin (2009) and Wolfer (1973), who found that individualised information and support are key elements in a patient's recovery process.
To increase the study's credibility (internal validity), the fourth author (CLS) analysed the interviews independently, testing the accuracy of meaning units and categories. As another step, quotations from the interviews were included to strengthen the creation of the categories. One of the authors (EA) conducted all interviews using the same semi-structured interview guide for all study participants. However, transcriptions were made by all three authors who performed data analysis. The interview questions were tested in one interview, and as no changes were needed to the interview guide, this interview was included in the study.
Dependability (reliability) was demonstrated by describing every step of the data analysis as clearly as possible, to let the readers follow the creation of meaning units, categories and finally the themes.
Transferability (external validity) was ensured by describing the study context and participants as well as the inclusion and exclusion criteria.
To increase conformability (objectivity), the writers worked closely with the interview text, giving quotations from different interviews. This was to minimise the influence of the authors' preunderstanding of the subject under analysis, namely health. Three of the authors (EA, HE and CLS) worked in different surgical departments, and only one of the authors (EA), who also conducted the interviews, had previously worked with patients with PC. Thus, three of the authors (HE, KH and CLS) were unfamiliar with the specific clinical course or postoperative recovery after CRS and HIPEC, but they were familiar with the concept of surgery, which increased the conformability of the findings.
One limitation of this study concerns the patients who were excluded due to language difficulties or because they did not have the CRS and HIPEC treatment. Two of the latter had no disease and thus left the hospital early after surgery where the abdomen was ‘opened, inspected and closed’. Five other patients underwent this same procedure, but nothing could be done for these patients due to the extensive spread of disease. One can speculate that in this group, palliative care would be the choice of treatment, and thus, more reactions or emotions in terms of anxiety or depression might be expected. Additionally, two patients were excluded, one because of poor mental health prior to surgery. This patient and other similar patients are important to follow up and study with a focus on their mental health because they possibly have other support needs.
However, the course of care for patients not receiving CRS and HIPEC may be different, and thus, this group was excluded. There were no differences between the excluded group and the study participants with regard to age and gender.
Another possible limitation of the study is the number of interviews. However, the 20 interviews were rich, and saturation was reached after 14 interviews.